Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

has anyone payed private for a dx of Aspergers ? if so how much?

78 replies

trace2 · 17/09/2008 15:39

we been told it can take years to get a dx for ds so thinking of going private, do we wait for nhs or pay? does anyone know how much it is?

but i can not understand how it takes so long on nhs, where when you pay you can find out in a day!

OP posts:
Peachy · 18/09/2008 09:43

chikd development centre

trace2 · 18/09/2008 09:46

thank you

OP posts:
trace2 · 18/09/2008 09:48

dont think we have that around here

OP posts:
TotalChaos · 18/09/2008 09:54

peachy - do CDCs deal with the over 5 age group though?

retired goth - DS's joint clinic assessment for ASD took 13 months on the waiting list - was told by other professionals that usual wait to DX ASD in my city was in region of 18 months - so that 1-2 year thing may be true - but no harm in doing a bit of phone tag and checking out waiting list length for yourself.

Niecie · 18/09/2008 09:59

You don't need a statement to help from the school though. If you can get your DS on the SN register then they have to help, they just don't get funding.

Do you think he is likely to get a dx? Why do the school not think there is a problem? I think their lack of cooperation is your biggest stumbling block. You could be getting help now if they agreed to put your DS on the register. My DS was on the register and getting help before his dx, even though he doesn't have a statement.

Sorry a lot of questions but statements are very hard to come by. My DS doesn't have one despite having a dx of AS and dyspraxia but he does get help anyway. My worry is that they can stop it any time without a statement but so far so good.

The whole process took 18 months for us although the first appointment was 5 mths after the initial referral. Partly I think that is because they don't like to dx children too young as they may just be a bit immature and they can grow out of it.

You need to get a referral from a GP to a paed rather than the ed psych as ed psych can't dx many conditions, their role is to treat and advise.

twocutedarlings · 18/09/2008 10:06

Trace - Ryegate is a CDC , Yes i would go back to the GP and ask for a referal to this clinic

Ryegate

I dont think you can request which pead you see, but if you can Sue Gentle is DD1 consultant and she is fantastic!! DD1 adores her .

With DD they used the DISCO assessment, we saw everyone in one go, pead, salt, psyc.

TC - DD is now 6 and still under the CDC, also lots of the DCs in the waiting room are older i would say upto about the age of 14, HTH

trace2 · 18/09/2008 10:20

Niecie gp as refered us to cahms, but the wait been told for first app is about 10m away! and yes i do think ds will get a dx we had an idea from an early age ds was diffrent at 3 years we got refered about his behavour and paddys and not sleeping, but dh didnt like the hole idea so we stopped going(wish now we carried on) dh his self looks like hes on the spectrum.

his school dont see have of it mostly happens outside school, at school hes classed as the shy child who sits at the back and dont get involved, even though we beeen in about play times hes on his own as he can not understand how they play, when he trys to he can not, he dont get involed with school disscusions but again they donr see that as a problem

OP posts:
trace2 · 18/09/2008 10:24

thank you just had a phone call from private clinc its £600 for 3 -45min visits and he then sends a letter what hes found to us and gp and when he gets letter for referal from gp he see you with in two weeks.

OP posts:
Peachy · 18/09/2008 10:25

trace he sound a bit like ds1, at least how he would be without the aggression.

lots of as kids function better either at home or school; they have a safe place where they can let the stresses go and let off the stress of appearing nt (ie be more challenging. Others function worst in the hardest places, perhaps because ther ability to delay the overload isn't so well developed? its why some kids behave very dfferently in different places. ds1 is good, if no way nt, in class based sessios: in the playground he s hellish

trace2 · 18/09/2008 10:28

madean app with gp to ask if we can go to rygate first,if not maybe go and see the consulant head psychologist

OP posts:
trace2 · 18/09/2008 10:34

peachy heas got aggression i have told the teachers if they carry on laughing at him he will hurt them, we had some friends and her son used to laugh at him while we was out and he is diffrent and they dont understand him but he got hold of him and went to stangle him and was shaking him it took us a while to get him of him, or takes it out on us it dont take much .

OP posts:
Peachy · 18/09/2008 10:42

ok then, thats quite significant as he will lose his school place if he does that

when we applied for ds1's statement I wrote that if he harmed a schoolmate I would hold them responsible. te school laughed at the time (forunately the lea didnt), a year down the line theyre desperate: he's on the waiting list of every behavioural specialist locally (but the ed psych dept is officiall closed due to staff shortages), hurts others most days and there have been letters begging the school to send him to ms, but there isnt an appropriate ms school he can access.

parents know their kid well. so make very sure they lisen, and put everything into writing so they cant claim they didnt know if he does hurt someone.

Peachy · 18/09/2008 10:43

srry not ms- behavioural unit

trace2 · 18/09/2008 10:55

peachy how old is your ds? and did aggression
get worse? as ds seems to be getting frustrated which causer the temper flare ups and getting more and more

OP posts:
trace2 · 18/09/2008 10:59

we are really stuggling with dd illness and ds,

OP posts:
emmaapple · 18/09/2008 11:40

I am thinking of getting a private diagnosis for dd1 for similar reasons to you trace. Would you be able to give me the details of the clinic you have found as the only ones I can find are in London/SE and cost about £1500?

Niecie · 18/09/2008 11:48

Your DS sounds a bit like my DS trace2.

He is a bit out of it at school, finds it hard to play with others. He does have 3 friends but he is growing apart from them as they get older. He often plays by himself and I keep telling him to try and join in. The other day I asked if he had played with them at break time that day and he said he hadn't but it was my fault as I hadn't reminded him he should.

But he isn't particularly aggressive although he can get really worked up about things. It is more like a toddler tantrum than anything and he is quite capable of doing it in public which children of 8 don't usually do.

I still think that faced with your very real concerns, the fact you have a GP referral and his odd behaviour at school that the school should be taking you seriously and helping out. My DS has a friendship group, run with a teacher, where he is taught the 'rules' of playing with two NT children and another SN child. I am not sure it works but at least they are doing something.

Have you spoken only spoken the teacher or the SENCO as well? I know you really want a dx but if you could get the school on-side it would help. I know not all schools are cooperative though, as Peachy has said. I guess we are very lucky that the school has chosen to help us out, especially as DS doesn't have a statment.

amber32002 · 18/09/2008 11:57

Can't add a lot to the info about diagnosis for AS, but as an adult that has it, I find some of this info is sometimes useful to help a school to understand about it and what needs to happen:

For most people, their brain can cope with sight, sound, touch, smell and taste all at the same time. It?s a bit like one of those extension leads where you have lots of different ?sockets? to plug each of your senses into, so you can see things, hear things, touch things, and your brain works out how to cope with each one and how to balance it all.

Mine only has one ?electric socket? for all of those senses. So I can either see, hear, smell something, taste something or feel something. My brain can try to do two or three of them at once, like when I?m talking with people, but it?ll start to overload the brain's wiring. If I do all of them at once, it's SO difficult to cope with, my brain tries to shut down so it can cool down a bit, and it's very unpleasant to experience. If I can't shut down, I'll have to get cross with people who won't let me, as it hurts so much. As an adult, I can control what sort of 'cross', but a child can't.

My brain has learned to avoid all this as much as possible, by learning over and over again what will happen in a situation, so it can ?switch off? senses it doesn?t need at that moment. That?s why people with Asperger syndrome repeat things over and over, and can seem quite deaf at times, or not see something, or walk into things or drop things ? those senses are ?switched off? at the time to make room for the other ones. It takes most of our life for our brains to know enough to get all that switching right, and sometimes we just can?t switch the plugs round fast enough. It's like having tele with no sound, or sound with no tele. and if you plug both in, the tele doesn't work at all or you get a load of static on it. The anger from a child is the 'static'.

It doesn?t help that we don?t have any good brain-wiring to the face-recognising stuff in our brains, or the body-language stuff, so we can?t recognise people or guess their mood. Or know the right thing to say unless we learn it. It also doesn't help that we take things so literally, so if you say "take a seat", we'll probably pick it up and wonder where to take it to.

We learn by carefully watching and copying, so we learn which senses we need, when. That only happens with age, and if someone has a high enough IQ to cope with it. It might take a long time to learn enough for me to do this really safely each time.

That?s why a supporter is needed to sit with me if I'm doing something new or different. I need someone whose senses are all working all the time, and who knows what they?re doing, and who knows what I can?t do yet. That way I can copy them and learn from them, and if I?ve managed to ?switch off? the wrong thing, they?ll know I?m not being rude and will be able to help explain to others.

In a possible emergency:

If it goes wrong for me, I will go very very quiet. Children may react with anger or screaming or running about wildly.

Unfortunately, helping us in a crisis where we've got overloaded from too much noise, smell, taste, texture, sound etc is exactly the opposite of helping an 'ordinary' person. If possible....

? Do not make eye contact
? Do not touch us unless you have to.
? Do not ask questions or chat to us unless we talk first. (This is all going to be difficult! It?s all the opposite of First Aid training!)
? Help us get to sit somewhere safe and quiet in silence for a while, not a room with flickering fluorescent lights or machinery working in it (to see if I can get some ?emergency power? to our brains back on again).
? An idea is to look for a heavy coat or blanket, and put that round us. The pressure from it actually helps to stop some of the overload (but hugging us often doesn?t have that same effect at all - don?t ask me why, no clue really).

Summary: We can only do one thing at a time, and trying to take in loads of info about the world around us all at once is possibly hell. The school needs to understand and to help a child to cope with it as best they can.

trace2 · 18/09/2008 12:01

sat here crying i thought i would try ringing our camhs team to find out and guess what they not even got a referal for ds told to ring gp i have, and i spoke to the lady who did it all here goes what happened!

we went to gp with list of concerns, she said i think he as dyslesic but refered us to comuntity pead,we saw him at hospital he said with 5 mins he thinks ds as aspergers but he only does under 5s, then they rang our other gp and he said i think hes aspergers and the pead at hospital says yes i think so, but you need to go to cahms, well resptionist then sends back to comuntity pead at new street and they sent back saying its not us( cahms is in same building as new street) so all this ds only just sent off from gp on 16th this month so 5 weeks wasted.

sorry i just needed to get this of my chest!

emmaapple can you cat me and ill give you number but ts in yorkshire or email me at
tracy pearson6 at hot mail. com

Niecie thank you for sharing yes they sound v near the same as your ds got AS?

OP posts:
trace2 · 18/09/2008 12:18

amber32002 thank you so much i have found your story very helpfull and more should read this,

OP posts:
Peachy · 18/09/2008 12:34

DS1 is almost 9 (December). I should emphasise that A: he is atypical- far worse than most; and B he has extra comlications- severe dyslexia (just earned to write surname despite being very bright), semantic pragmatic (a language thing). He was assessed age 6 at the 16+ ability range for language, sadly he now talks in school rarely so they dn't see that, but we know its still there. He never babbled, one day he didnt speak, the next he was conversant.

DS1 has got much worse with his aggression at school, he finds it ahrder to cope as independence is increasingly expected of him- and I guess as his peers move forwards; we live in a village and we see tem walking without aprents to the park etc- I seriously doubt DS1 will do that for ages yet; its unlikely he will attend the local comp as they dont allow pupils on premises at lunchtime and I coldnt imagine hm going off- could be a disaster.

We think ds1 also has some level of depression, he gets irritable boel and my DH gets very severe depression (to the extent he ahs mild agoraphobia now and has been away from work 3 weeks, hoping to return 1st october).

At home we have better coping strategies than we used to; he has a room fitted with an alarm- we couldnt face a lock but at least an alarm warns us where he is at 2am! He attacks his closest sibling (ds2, 7.5, nt) daily and more and has an intense dislike for him. he has hospitalised him in the past, most recently was about a month ago, A&E trip. He isnt as bad with ds3 as ds3 has bgger needs and ds1 knows that he cannot help himself in the way ds1 expects; there's no point ds1 expecting total servitude (which is what he expects, and the lack of which that causes most incidents) from ds3, ds3 is known in the family as Mr Oblivious.

BIBIC taught me full restriant methods which I have used loads although most recent was August on holiday- but that was a mnegameltdown that caused dh much injury due to biting and scratching.

We also have other dangerous things- ds1 will make 'p[otions' out of anything safe or not, climb out of windows (tinks himself invulnerable), persuade others to do the same- is cnvinced he can outrun a car! He really is a danger to anyone around him if not supervised (Unless visiting Riven LOL when he pretends to be angelic pmsl).

In mitgation, ds1 can also be exceptionally lovcing and we are very close; we spend time together and its wonderful, he's quite girly then (he wans to be Gok Wan!) and its lovely; he adores the baby too, though I worry about when baby gets more mobile etc and baby will need a door alarm too then as he dropped ds3 in the middle of the night after gettimng into his room, and we always wonder if that triggered ds3's regression .

Niecie · 18/09/2008 12:37

Oh trace that is not good is it. At least you have found out now and are getting it sorted.

Yes my DS does have mild AS. That is his dx although the consultant clinical paed psychologist we saw said social communication difficulties not bad enough to label AS. However, we had a review meeting when everybody had seen him gets together at the end of the process and they said AS. I might accept it better if he wasn't textbook dyspraxic and also if the psych, the OT and the SALT who saw him were there and not just other members of their department or in the case of the OT were not represented at the meeting at all.

Sometimes I do think they got it right though - the hand flapping, the constant talking and the problems with social relationships and making friends are pretty classic AS. But then dyspraxic children can the same.

And so it goes on, round and round my head. I query it and eveybody says that labels don't matter and so long as you are getting help that is all that counts but I am not so sure. I have heard of others with the dx of dyspraxi of social comms problems and I think it suits him better but what do I know?

Sorry I am hijacking a bit. Talk to the school SENCO, tell the the paed and the psych say AS and that you want help. At the very least they should be working to help him feel more included.

Have you looked at any books, or see the NAS website? There are things you can do to help and to understand a bit better. Tbh, nobody gives you a training lesson even if you do get a dx. You have to work out what works for you and your dc.

DrHorrible · 18/09/2008 12:44

Love the switch explanation! I will try and remember that more when dealing with DD.

Not really relevant to this thread, but since we're here...

Peachy - your run down of AS, HFA etc - when it says about no language delay, can I check that you do mean LANGUAGE and not speech? DD has all the words in her head, but her formation is an issue (still waiting for SALT). I have always seen her as AS and not HFA iyswim

Niecie · 18/09/2008 12:51

Amber that was really useful.

The children can't tell us what it feels like to have AS and it is really hard for us to understand, well for me anyway.

You said that when you can't shut your brain down, it really hurts. Can I ask if that is a physical pain, like a headache or whether it is more emotional than that?

Actually I do take some comfort from your post and from reading your profile. One of the most frightening things I read when DS was first diagnosed was that he probably wouldn't get married and even that he wouldn't be able to hold down a job. We don't know how DS will turn out but it is good to have some hope that he can have a happy and useful life.

Peachy · 18/09/2008 13:13

Actually DrHorrible I'm not certan, sorry- JimJams is the person to ask; I find the definitions handy when dealng with ds3 but he has severe sppech & langage disorders so wouldnt know how to classify someone on one side, iyswim.